Yu notis wan big, dak rɛd, wayn kɔlɔ bɔn mak na yu pikin in bɔdi we dɛn bɔn am? Ɔ, as yu pikin de gro, i tan lɛk se wan leg lɔng ɛn tik pas di ɔda wan? Yu kin notis bak se vein dɛn de we kin twist. If yu pikin gɛt wan ɔ mɔ pan dɛn sik ya, i impɔtant fɔ mek yu no bɔt di kayn sik we nɔ kin apin we wi de tɔk bɔt tide we dɛn kɔl Klippel-Trenaunay Syndrome (KTS). Pan ɔl we i kin tan lɛk se i kɔmplikt, lɛ wi kip am simpul.
Fɔ tɔk am simpul wan, wetin na Klippel-Trenaunay Syndrome (KTS)?
KTS na wan sik we kin apin we dɛn bɔn pikin we nɔ kin apin so ɔltɛm we dɛn bɔn am. Na lɛk wan pan ɛvri milyɔn pipul dɛn nɔmɔ i kin afɛkt ɔlsay na di wɔl. So i nɔ kin rili kɔmɔn. Tri men prɔblɛm de wae yu kin si pan pɔrsin wae gɛt dis sik.
1. Rεd bכn mak na di skin: dεn kכl dis bak ``Port-wine stain'' biכs i lεk di kכla fכ sכm wayn.
2. Varicose veins: dis na di kכndyushכn we wi kכl ``Varicose veins''.
3. Wan an ɔ leg we de gro big pas di ɔda wan: Wan patikyula leg kin gro lɔng ɔ tik pas di ɔda wan.
Apat frɔm dɛn tri men sayn ya, sɔm pipul dɛn kin gɛt prɔblɛm bak wit di limfatik sistɛm, we kin ɛp fɔ mek di wata balans na wi bɔdi.
Sɔntɛnde dɔktɔ dɛn kin kɔl dis ``CLVM.'' Dis min se dis sik kin afɛkt sɔm pat dɛn na wi bɔdi.
- C (Capillaries): Dis na di fayn fayn bכdi we de kכnεkt wi vein dεm εn di at dεm. Dat rɛd bɔn mak de bikɔs ɔf di chenj dɛn we de apin pan dɛn tin ya.
- L (Lymphatic system): Dat min se di lymphatic system. Pat pan wi imyun sistɛm.
- V (Veins): Dat min veins. Di blɔd vesel dɛm we de kɛr blɔd go na di at.
- M (Malformation): Dis min se wan pat nɔ dɔn divɛlɔp nɔmal wan.
Tu Frɛnch dɔktɔ dɛn bin kam fɔ no bɔt dis sik fɔ di fɔstɛm insay 1900. Na dat mek dɛn gi dis sik in nem to dɛn.
Wetin na di sayn dɛm fɔ pɔrsin wae gɛt KTS?
Lɛ wi tek tɛm luk aw dis sik kin afɛkt di blɔd vesel dɛm, di sɔft tisu dɛm, di bon dɛm, ɛn di limf vesel dɛm fɔ pɔsin we gɛt KTS. Fɔ ɔndastand dɛn sayn ya klia wan, si di tebul we de dɔŋ ya.
| Di sayn we de sho se di sik de | Wan simpul ɛksplen |
|---|---|
| Pɔt-wayn stayn | Dis kin bi di fɔs sayn fɔ KTS. I kin kam we di smɔl smɔl blɔd vesel dɛn (kapilari dɛn) we de ɔnda di skin kin swel. I kin difrɛn frɔm layt pink to dak wayn-rɛd. As yu de ol, dis spat kin dak ɔ layt. Sɔntɛnde, smɔl smɔl blista dɛn kin kɔmɔt na di say we dɛn de, we kin bɔs ɛn blɔd. |
| Varikɔs veins dɛn | Dis kɔndishɔn kin afɛkt ɔlmost ɔlman wae gɛt KTS. we dεn prכblεm ya apin na di vein dεm we de na di skin, di vein dεm na di leg dεm, spεshal wan na di groin εn di tכŋ dεm, kin bi blu in kכla. Sɔntɛnde, i kin afɛkt bak di vein dɛm we de rɔn dip insay di bɔdi. if dis apin, risk de fכ mek bכdi kכlכt (Deep Vein Thrombosis - DVT). |
| Abnɔmal growth fɔ wan an ɔ leg | Bɔku tɛm, na wan an ɔ leg nɔmɔ kin gro pas di ɔda wan. Dis kin bigin we dɛn smɔl. Bɔku tɛm, i kin afɛkt wan leg. Wan leg kin lɔng ɔ tik pas di ɔda wan. Dis kin mek i nɔ izi fɔ waka ɛn muv. |
| Prɔblɛm dɛn we de na di limfatik sistɛm | Sɔm pipul dɛn kin gɛt ɛkstra ɔ abnɔmal shep limf vessel dɛn. We dɛn tin ya nɔ de wok fayn, dɛn kin lik di wata we de na di limf, mek di leg dɛn swel, ɔ mek dɛn gɛt prɔblɛm wit di bɛlɛ, blad, ɔ bɔdi. |
| Pen | Di vein dɛn kin it ɔ at. Prɔblɛm wit blɔd sakulayshɔn kin mek di leg dɛn swel ɛn fil pen. Dɔn bak, di leg dɛn we dɔn big kin fil ebi ɔ dɛn kin fil pen. |
Wetin mek dis tin kin rili apin?
Bɔku tɛm, KTS kin kam bikɔs wan pan wi jin dɛn chenj. fכ bi prεsis, i de kכz fכ wan mכtεshכn na di jin we dεn kכl PIK3CA.
Di impɔtant tin na dat dis nɔto sɔntin we mama ɛn pikin kin gɛt. Dis jεnεtik mכtεshכn de apin wan wan tεm, witout eni rizin. So, as mama ɛn papa, no rizin nɔ de fɔ fil bad ɔ fɔ blem yusɛf fɔ dis.
Sɔntɛnde pipul dɛn we nɔ gɛt chenj na di PIK3CA jin kin gɛt KTS bak, so di wan dɛn we de stɔdi bɔt dis biliv se ɔda chenj dɛn na di jɛnɛtiks kin mek dɛn du dat.
Us ɔda kɔmplikɛshɔn dɛn kin apin bikɔs ɔf KTS?
If dɛn nɔ de manej KTS fayn, sɔm prɔblɛm dɛn kin apin, ɛn i impɔtant fɔ no bɔt dɛn.
- Blɔd klɔt: Blɔd klɔt (DVT) kin fɔm na di dip vein dɛn na di leg. di big risk na dat if dis blɔd klɔt brok ɛn stɔp na wan vein na di lכng, i kin bi wan sik we de mek pɔsin in layf de pan denja (Pulmonary Embolism).
- Infεkshכn na di skin: Baktri infεkshכn dεm we de apin כnda di skin (sεlulayt) kin apin.
- Swel: Prɔblɛm wit di limfatik sistɛm kin mek wata gɛda na di bɔdi ɛn mek i swel (Lymphedema).
- Blɔd we de kɔmɔt insay di bɔdi: Blɔd kin kɔmɔt na di bɛlɛ, insay di bɔdi, di blad, ɔ pan uman dɛn, di riprodaktiv sistɛm.
Na smɔl tɛm nɔmɔ, sɔm pipul dɛn we gɛt KTS kin gɛt prɔblɛm bak we dɛn bɔn we gɛt fɔ du wit di finga ɔ fut finga dɛn.
- Fɔ gɛt ɛkstra finga dɛn (Polydactyly) .
- Syndactyly (finga dɛn jɔyn togɛda) .
Aw dɔktɔ kin no di kɔrɛkt we aw i gɛt KTS?
Dɔktɔ go fɔs no di sik bay we i luk di pikin in bɔdi. If at le tu pan di tri men sayn dεm we wi bin dכn tכk bכt (bכn mak dεm, spayda vein dεm, εn limb dεm we big) de, dεn kin sכspεkt se i kin bi KTS. Bikɔs bɔku tɛm dɛn kin si dɛn sayn ya we dɛn bɔn am, sɔm tɛm dɛn de we dɛn kin no se i gɛt am bifo di pikin go na os frɔm ɔspitul.
Di dɔktɔ kin ɔda fɔ du difrɛn tɛst fɔ no if i gɛt dis sik ɛn fɔ no ustɛm di tin dɛn we de apin to di bɔdi.
| Tɛst | Wetin yu si pan dis? |
|---|---|
| CT skan ɔ MRI skan | Chek di kondishɔn fɔ di bɔdi in sɔft tisu ɛn bon dɛm, ɛn di mak we di bɔdi nɔ de gro fayn. |
| MRA (Magnetik Rɛsɔnans Angiogram) . | Dis na spɛshal kayn MRI skan. I kin si di kɔndishɔn fɔ di blɔd vesel ɛn vein dɛn rili klia wan. |
| Doppler Ultrasound we dɛn kin yuz | Luk di we aw blɔd de pas na di vein ɛn at, ɛn si if ɛnitin de we dɔn blok ɔ we de go bak ɛnisay. |
Wetin na di tritmɛnt dɛm fɔ KTS?
No mɛrɛsin nɔ de fɔ KTS. Bɔt bɔku tritmɛnt dɛn de we kin ɛp pipul dɛn fɔ kɔntrol dɛn sik ɛn prɔblɛm dɛn ɛn liv nɔmal layf. Di tritmɛnt dipen pan di pɔrsin in sayn dɛm.
| Di we aw dɛn kin trit am | Wetin kin apin to am? |
|---|---|
| Di tin dɛn we de mek blɔd tan (Anticoagulants) . | Dis mɛrɛsin de ɛp fɔ ridyus di risk fɔ mek blɔd klɔt. |
| Di drɔg we dɛn kɔl Sirolimus | Dis mɛrɛsin de slo ɔ stɔp di blɔd vesel dɛm we nɔr de gro, ɛn dis kin mek di sik ɛn prɔblɛm dɛn nɔ bɔku. |
| Kɔmpreshɔn Stɔkin dɛn | Dɛn tin ya kin ɛp fɔ mek di leg dɛn nɔ swel ɛn nɔ fil pen, ɛn i kin mek di blɔd nɔ klin. Dɛn kin ɛp fɔ mek blɔd kɔmɔt na di leg dɛn ɛn go na di at. |
| Shoe lift dɛn we dɛn kin yuz | If yu leg dɛn nɔ lɔng di sem, if yu ad ay pat pan wan sus, dat kin mek i izi fɔ waka. Dis kin ɛp bak fɔ ridyus di risk fɔ gɛt skɔliosis. |
| Laser tɛrapi | dis tritmεnt dεn de yuz fכ layt di kכla fכ wan ``pכt-wayn stεn'' bכtmak na di skin. |
| Sklɛrotɛrapi | Dɛn kin injɛkt wan spɛshal wata insay di vein dɛn we gɛt prɔblɛm, we kin mek dɛn nɔ wok ɛn sidɔm. Dis na fayn tritmɛnt fɔ di vayrɔs veins. |
| Ɔpreshɔn | Dɛn kin du ɔpreshɔn fɔ kɔrɛkt di big big prɔblɛm dɛn we de na di vein, fɔ mek di leg lɔng ikwal, ɔ fɔ ridyus di sayz fɔ wan an/lɛg we dɔn big bay we dɛn pul di tisu we pasmak. |
Wetin na sɔm tin dɛn we yu fɔ tek tɛm wit mɔ we yu de liv wit KTS?
We yu de liv wit KTS, i rili impɔtant fɔ ɔndastand yu bɔdi gud gud wan ɛn tek kia ɔf sɔm tin dɛn.
- Tek kia ɔf yu skin gud gud wan: If yu kip yu skin klin ɛn nɔ gɛt ɛni bad bad tin, dat kin mek yu nɔ gɛt bɔku sik dɛn na yu skin.
- Stay as active as possible: Nɔ de na di sem pozishɔn fɔ tu lɔng. We yu de du ɛksɛsayz ɛn waka ɔltɛm, dat kin mek yu nɔ gɛt bɔku blɔd.
- Wear kɔmpreshɔn klos lɛk aw yu dɔktɔ tɛl yu: If yu dɔktɔ dɔn tɛl yu am, wɛr spɛshal sɔks ɔ klos ɔltɛm we go mek yu nɔ swel.
- Nɔ yuz sɔm we dɛn fɔ kɔntrol bɔn pikin: Tɔk to yu dɔktɔ bɔt aw fɔ avɔyd tin dɛn lɛk bɔn kɔntrol pils we gɛt di ɔmon we dɛn kɔl ɛstrojen, bikɔs dɛn kin mek yu blɔd klɔt mɔ ɛn mɔ.
- We yu gɛt bɛlɛ ɛn bifo yu du di ɔpreshɔn: Insay dɛn tɛm ya, yu go nid fɔ tek mɛrɛsin dɛn we de mek yu blɔd tan fɔ mek yu blɔd nɔ klɔt, bikɔs di risk fɔ mek yu blɔd rɔtin kin bɔku. Tɔk to yu dɔktɔ bɔt dis ɛn gɛt advays.
Ustɛm a fɔ go to dɔktɔ? Wetin na di tɛm dɛn fɔ go na di ETU?
I impɔtant fɔ mek pɔsin we gɛt KTS de chɛk-ap ɔltɛm ɔlsay na in layf. Dis na we dɛn kin wach di sik, dɛn kin si se di tritmɛnt de wok, ɛn dɛn kin mek ɛni chenj we nid fɔ apin.
Bɔt sɔntɛnde, yu kin nid fɔ go na ɔspitul we yu gɛt ɛnitin fɔ du wit am. Yu fɔ no bɔt dɛn sayn ya.
Dis na di tin dɛm wae yu nid fɔ go na di ETU (Imergency Treatment Unit) kwik kwik wan:
* If yu notis sayn dɛn we de sho se blɔd dɔn rɔtin: If wan leg de pen wantɛm wantɛm, swel, rɛd, ɛn fil wam we yu tɔch yu, dat kin bi dip vein thrombosis (DVT).
* If yu gɛt sayn dɛn we de sho se blɔd dɔn rɔtin na yu lɔng: Yu chɛst de pen wantɛm wantɛm, i nɔ izi fɔ blo, yu de blo kwik kwik wan, ɔ yu de kɔf blɔd, i kin bi se yu gɛt pulmonary embolism. Dis na imejensi.
* If blɔd de kɔmɔt bad bad wan: If blɔd de kɔmɔt ɛnisay na di bɔdi we pɔsin nɔ ebul fɔ kɔntrol.
If yu si ɛni wan pan dɛn sayn ya, nɔ west tɛm ɛn go na di ɔspitul we de nia yu in Imejɛnsi Dipatmɛnt (ETU) wantɛm wantɛm.
KTS na kɔmpleks kɔndishɔn, so yu kin gɛt bɔku kwɛstyɔn dɛn. Ɛnitɛm we yu go to yu dɔktɔ, lisin to ɔltin we de na yu maynd. Nɔ tink se, "Dis na jɔs prɔblɛm we a nɔ nid fɔ dil wit." I bɛtɛ fɔ mek yu tɔk to yu dɔktɔ opin ɛn ɔnɛs.
Mɛsej we dɛn kin kɛr go na os
- Klippel-Trenaunay Syndrome (KTS) na wan sik we nɔ kin apin we dɛn bɔn pikin we nɔ kin gɛt ɛni fɔlt pan di mama ɛn papa.
- di tri men sayn dεm na: wan dak rεd bכn mak (pכt-wayn stεn), vεrikos vein dεm, εn wan an כ leg big pas di כda wan.
- Pan ɔl we dis sik nɔ go ebul fɔ wɛl ɔl, bɔku tritmɛnt dɛn de we go ɛp yu fɔ kɔntrol yu sik dɛn ɛn liv fayn layf.
- di imכtant kכmplikεshכn dεm we yu fכ wach pan na di bכdi we de kכlכt (DVT, Pulmonary Embolism) εn di bכdi we de kכmכt pasmak. Yu fɔ no ɔltɛm bɔt di sayn dɛn we de sho se dɛn tin ya de wɔn yu.
- I rili impɔtant fɔ de tɔk to yu dɔktɔ ɔl yu layf ɛn go de chɛk-ap ɔltɛm.
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